Help needed..

[Siva180477]

Hi, I am a 41yrs old male from Malaysia. Only last year i know that am in stage 3a of CKD. After 1 full year of founding and wasting my money on hospitals and clinics, I came to know that nobody care early stage of CKD here in Malaysia. Even our local Davita center, which they told me that they are only dialysis centers. Here no one could get in to government hospitals as they dont entertain early stages of CKD. And private hospitals only keen on how much they make from each CKD patients and most of them explaining about dialysis even on stage 3a. Here i dont even came to know if there is a renal dietitians. On my experience they just want u to get to the End Stage as the dialysis is a big profitable business here. Is anybody can recommend me any Nephrologists or Renal Dietitians in Malaysia?. Thanks in advance..

[Angie2020]

Hi siva

It seems to be a problem worldwide with people not being told they are in the early stages of ckd so your not alone siva.I wonder if a doctor diagnoses himself with stage 1 that he'll ignore it until he gets to stage 3! I too wasn't told until I was on stage 3. I can't recommend a doctor as I haven't even seen one myself yet and I live in the uk but davita.com online give you loads of information about diet and even have meal plans. Ive been on a kidney diet 4 days now and it is relieving some of the symptoms. Hope you find some answers on here. All then best to you

[Siva180477 in reply to Angie2020]

Thanks for the reply and clarification Angie2020. But Davita centres here operating as dialysis centers and they ask me to follow up with hospitals of which you can't get any help at all. Some of the Nephrologists here didn't have time to hear of your symptoms. And will always explain you the procedures of dialysis, like they only care the money they make from the dialysis. I dont understand why they ignore such a responsibility. Yes Angie2020, I am now trying to follow davita's recipe but it's hard to follow coz it's only has Europe kind of recipe. Coz we are here in the another half of the world taking different kind of food which a mix of Chinese, Indian, Malay, and Thailand recipes. We are a rice and curry having peoples and there is no recipe on Davita.com on our diet. Anyway, it's really nice to know that millions of peoples are ready share our own happiness and sorrows of being CKD patients. And thanks again Angie2020.. God Bless You..

[Angie2020 in reply to Siva180477]

. It's a limited diet but there are certain herbs and spices you can use. Hope you find some help soon siva.Wish you all the best

[Siva180477 in reply to Angie2020]

Thanks Angie2020. Yes. We have lots of herbs here. But doctors bans herbs. Will share here if i tested any herbs or Meds that works. For mean time am taking bottle groud which effectively reduce my sodium level and my hypertension. Am taking it 2-3 times a day cooked. After taking it my creatinine goes up but i have to make sure if the bottle groud helped it. Anyway. I will keep update. God bless..

[orangecity41 in reply to Angie2020]

I too was only diagnosed at stage 3b. I have been on renal diet for over 2 years and has slowed progression down. Also took the Davita class and it was very helpful.

[Siva180477 in reply to orangecity41]

Thanks for the info Orangcity41. Here we don't have Davita classes. Hope to meet any caring nephrologists online. If anyone have one, pls let me know. Thank you.

[Irelandy]

Hi Siva, I live in the UK and I was not told until my egfr was 26....stage 4. I have read that this is because if they told you at stage 3 it would overwhelm the national health system. I personally believe it's because the doctors don't know what to do. It seems to be generally accepted that there is very little can be done and the disease is just allowed to run its course.

[lowraind]

I was also told at Stage 3. One of the actions I take is to check each new meal that I am cooking by using the words renal friendly or kidney friendly, then the name of the meal, or the name of the meal and then ckd. Very often, the Davita site comes up, but often I also get other sites. Since you have the internet, you should be able to reach the online Davita courses on kidney disease.

[Mirr]

I am Malaysian and have CKD due to Lupus since I am 19 and I am 32 now. I was referred to dietitian 10 years ago when I was at stage 2. Back then I hate my session with dietitian because I'm still young and my mom has been monitoring food I eat and my dietitian just make it more complicated for me (but now I understand how important that was, of course).

With that saying, I found your story is rather surprising. Which hospital did you go? I go to UMMC (PPUM).

Tell your doctor you'd like to see a dietitian. One session should be enough. If you go to private hospital, you also only need a session.

But why waste money and time when you can go to DaVita.com , and simply key in the information like gfr, age etc. There is a lot of diet guidance/ courses there (which my mom refer to while taking care of me, that's why I didn't think I need a dietitian).

Also, don't take herbs please. It will make your kidney worsen. I have enough years seeing my fellow sick friends become sicker because of herbs. No kidding.

[agirlwithhope95 in reply to Mirr]

Hi guys, I can't help but to be very curious when reading many people are saying to stay away from herbs. May i know what kind of herbs you guys are referring to? so that i can stay away from it too.

I am a ckd patient from singapore with malay ethnicity so my cultural food tends to contain a lot of unhealthy ingredients such as coconut milk, msg, salt and protein which are all bad for the kidneys. I am learning to tailor my tastebuds to less tastier = more bland foods that contain little to no salt.